I Rode the Emotional Rollercoaster Today

I presented to a fabulous caring audience today that were mainly from the aged care sector and they totally inspired me. I went through so many emotions and almost ‘lost it’ and so did they (many told me afterwards, they were a bit teary ) but you could feel the ‘need for change’ in dementia care within the room.

I was totally cooked afterwards and almost choked on my pitta bread lunch, but was so worth it. Dad having multiple falls at the nursing home lately and me being tired certainly tested me today, but I now look forward to a rest in Melbourne with son Max for our boy’s weekend.

Thank you to the ‘Dementia Whisperers’ and DBMAS/Alzheimer’s Australia for allowing me to to tell our family story to try and make a difference. Keep on caring!

‘Dementia Downunder ‘ – Inaugural Afternoon Tea

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What a fabulous afternoon!

It was a thrill to have a lineup at the door waiting to get in. The reason?… Bob (Dad) made a rare public appearance out of his nursing home and of course arrived ‘fashionably late’ at the venue just after 2pm in a black convertible BMW.

It was a last minute decision to bring Dad but it was so worth it. A massive effort was required by the nursing home staff to have his meds done, get him ready, (placing him in the car took 20 mins), then we cruised the streets of Adelaide like a couple of rockstars. Bob kept trying to open his door on the way (while the car was moving) but eventually relaxed and laughed as we had the wind in our hair (well… Dad’s hair) before arriving at Kent Town and shuffling him into the room to an audience. You would swear Elvis had just entered the building:-).

As I am in Melbourne next weekend with my son, this DD event was my early Father’s Day and I loved it. To share Dad with such an understanding and caring group of people was very special to me .

Whilst it may have looked like I was under pressure and pre-occupied with Dad, this is just how you spend quality time with someone with dementia. (With one eye always on them)

I must say a special ‘thank you’ to Liz and Kate for all the delicious rocky road, scones and sandwiches. They were also instrumental in rotating ‘looking after’ Dad with Jane Doolette, allowing me to mix with everyone. Thank you very much ladies for this and also a big thanks to the ‘always happy’ Paris who helped handing out food plus a variety of other tasks.

We had a great mix of carers, trainers, family members, people with dementia and it was a very patient and sincere group indeed. It was so nice to not have to worry about Dad and who he might chat with, or what he might get up to, and touch.

The conversations flowed with ease and everyone stayed an extra hour to catch up on all things dementia. New friendships were made, information and stories were shared and food was devoured.The group bonded really well and laughed, especially when Dad without warning lifted up Nicki’s leg up in front of everyone.This is dementia….

A big thank you to everyone for attending and for all the preparation and clean up efforts to make this day possible.

Bring on the next event!

thank you
Brett.

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Dementia Downunder Afternoon Tea – The Dementia Whisperers Are Coming!

Great News! South Australia’s most knowledgeable dementia trainers will be attending the  inaugural ‘Dementia Downunder’ Afternoon Tea tomorrow.

Bring your tricky questions, and challenge Sue-ellen & Jane ( from DBMAS) to help find you a dementia related strategy. These ladies are the best in the business and we are really lucky to have both ladies attending at the same time.

The venue has been prepared. Look forward to seeing you there.

Saturday 27 August, 2016

2pm – 3.30pm

22 King William St, Kent Town.

Please rsvp via the ‘Meetup Event’

regards
Brett

Carer Burnout…”Are You Burning The Candle At Both Ends?”

When you are a caregiver for someone with dementia people often tell you to look after yourself, and you are priority #1.

If you are like me you will probably think to yourself “I’m fine….I am dealing with this and am doing ok”. (and you probably don’t like being told this as well very much either).

Early on I made a silent pact with Dad that I will care for him 24/7 and do whatever it takes to get the job done. The result?…..You end up providing a standard of care similar to me in the picture below…. with my eyes closed.🙂

The problem with this is Dad could then walk off and get outside and potentially get run over.

I now realize it is important to pace yourself and give yourself a break. You also don’t have to spend endless hours with the person to avoid feeling guilty. Sometimes a short burst of ‘quality caring’ can have just as much impact as sitting with someone for hours.If I personally ensure dad is not in pain, not uncomfortable and not unhappy I am content leaving him with the paid care staff to do their role. So why do I not let them do it all?…Because I can pick up subtle changes in dad’s decline and act upon them quickly eg involve doctors, adjust meds etc. I also love being around Dad as much as possible because we are close and have a great time together.

As Dad is constantly declining and his care needs are increasing (ahhhh),the way I approach things now is to ‘share the load’ and manage the time better with the paid carers in the nursing home and take different care shifts to my Mum. (eg I do mornings, and she does evenings and then switch after a while). This keeps you constantly learning and understanding the condition so much better. The care requirements at different times of the day can differ greatly and it gives you a better overall understanding of the impact of dementia.

So in a nutshell…….give yourself a break from time to time….don’t feel guilty…..and give yourself a small pat on the back occasionally.

Keep on Caring!

PS – Nicki Peaston from the Carer Wellness Centre you are the inspiration for this post. 🙂 (thank you!)

Is This The No#1 Problem in Dementia Care?

After 5 years of being surrounded by people with dementia, aged care facilities and hospitals I have come to a conclusion. Noise seems to be at the bottom of many behavioural issues when it comes to people with dementia and we need to do something about it.

Noise ….It is EVERYWHERE! and we are not putting enough emphasis on it when we search for answers why people with dementia act the way they do. They often cannot express their feelings or thoughts, and maybe we are chasing the wrong things?

I have some video of Dad in hospital and when I played it back I was shocked to hear the noise and it was not only ‘too loud’, the ever repeating beeping alarms on the machines combined with the bed alarms and the constant din of people in the hallways was like a cruel form of ‘water torture’. Can you imagine what it is like to be stuck in a bed all day listening to the same machines beeping over, and over, and over again?…It is no wonder most of the people with dementia in hospital are in the hallways, heading for the locked door trying to get out!

In hospital Dad was manically walking the hallways for 10-12 hours per day across 5 weeks and I believe it was the noise driving this. How do I know this?…because I was walking with him and witnessed a miraculous change in his behaviour that was mind blowing! We transferred him to another hospital which has a ward that specializes in treating people with dementia and surprise,surprise it has no stimulus, no noise, no bright lights and no beeping…just silence. To watch Dad on his first day walk over to a couch and sit down and rest, and be at peace was ‘game changing’. His medications were the same, and the environment was the only thing that was different….conclusion?…enemy no#1…noise!

It is no different in the aged care facilities and some have construction going on for extended periods and the sound of concrete saws, nail guns and jack hammers over breakfast is surely not the best way to start your day? We need to allow people with dementia to enjoy their mealtimes at least, and there should be a no construction noise policy across meal times.

The clanging of the cutlery and crockery on the meal carts needs to be a focus, and the vacuum cleaner is blaring nearly every morning when residents wake up. Is 7am – 9am the best time to be creating that kind of noise?

Nurses and care staff are often carrying phones which have alarms that go off constantly as residents trip their movement sensors in their room alerting them to a resident on the move. This is a great system that protects residents, but in some facilities every single bed alarm is triggered through the same phone and not just a designated area. The result?…the mobile phones on staff are constantly ringing and beeping as they try to attend their residents and invariably setting off unwanted behaviours.

In a nutshell….reduce the noise and reduce the problems. ….Hopefully this blog does not fall on deaf ears.

Complaints with Aged Care?…Here’s What You Can Do.

Often people do not know what their options are when it comes to a complaint, or even where to start. I have decided to try and make things a bit clearer and easier for you.

Complaints are often considered negative in our society, but if you have an ongoing unresolved concern, you may need an avenue to voice this. If a resolution can be made,care services improve, or something change for the better as a result of your complaint this can only be a positive thing.

I find overcoming problems in general to be more successful if I communicate respectfully and through the right channels to receive the desired results. I would hope that most complaints and concerns should be able to be sorted by the aged care provider in the first instance and is always best to give them the time and opportunity to resolve the concern.

HOW TO FIND OUT MORE INFORMATION BEFORE MAKING A COMPLAINT?

You can contact the relevant advocacy service in your relevant state. Below is a link to the contact details:

http://www.myagedcare.gov.au/how-make-complaint/advocacy-services

WHAT CAN YOU COMPLAIN ABOUT?

You can make a complaint about any area of the care and services you receive from an Australian Government-subsidised service provider.This might include areas such as:

• quality of care
• choice of activities
• personal care
• meals
• communication between you and staff
• physical environment.

WHO DO YOU COMPLAIN TO?

If you feel comfortable, the first thing you should do is let your service provider know about your concerns. Most of the time, your service provider is best placed to resolve complaints and alleviate your concerns. This can be the quickest and most effective way to find a solution.

However, if you don’t feel comfortable speaking with your service provider, or if your complaint hasn’t be resolved, you can contact the Aged Care Complaints Commissioner.

HOW TO MAKE A COMPLAINT:

https://www.agedcarecomplaints.gov.au/raising-a-complaint/…/

If they are unable to help you, they will tell you why and either suggest who you can contact or refer you to other organisations such as a state-based Health Care Complaints Commission or the Australian Health Practitioner Regulation Agency.

WHO CAN MAKE A COMPLAINT?:

Anyone can make a complaint, including:

• you (the person receiving care)
• your family members
• your friends
• your representatives
• aged care staff
• volunteers
• health professionals.

WHAT HAPPENS AFTER YOU LODGE A COMPLAINT?:

When you lodge a complaint with the Complaints Commissioner, the process will be explained to you, including your options. You may be asked for more details and what your expectations are.

The more information you provide when you lodge your complaint, the better – it will help the Complaints Commissioner understand all the issues and determine the best way to resolve your concerns.

Visit the Aged Care Complaints Commissioner website for more information about how the Complaints Commissioner can help you resolve your complaint.

https://www.agedcarecomplaints.gov.au/raising-a-complaint/…/

YOUR REVIEW RIGHTS:

If you have lodged a complaint with the Aged Care Complaints Commissioner and are not happy with a decision or the complaints process, you can provide feedback and ask the Complaints Commissioner to review the decision.

You can also ask for a review of our complaints process by the Commonwealth Ombudsman.

HOW TO SEEK A REVIEW BY THE COMPLAINTS COMMISSIONER:

A ‘Your review rights‘ fact sheet on the Complaint Commissioner’s website outlines options to seek review of the Aged Care Complaints Commissioner’s decisions or process.

If you’re still unsure about your review rights call the Complaints Commissioner on 1800 550 552 and ask to speak to a complaints manager in your state or territory.

HOW TO SEEK A REVIEW BY THE COMMONWEALTH OMBUDSMEN

The Commonwealth Ombudsman can investigate complaints about the actions and decisions of Australian Government agencies, including those of the Aged Care Complaints Commissioner, to see if they are wrong, unjust, unlawful, discriminatory or unfair.

If you are not satisfied with an outcome offered by the Aged Care Complaints Commissioner, you can contact the Ombudsman’s office through the Commonwealth Ombudsman websitehttp://www.ombudsman.gov.au/ or by phoning 1300 362 072.

*Disclaimer – Please note any opinions are my own and you should seek your own professional legal advice or contact the relevant organizations to resolve your concerns.This post is to simply assist and help connect people with the channels they may require in regard to complaints.The information above has been extracted from the www.agedcarecomplaints.gov.au &http://www.myagedcare.gov.au/ websites.

Time For Change

After the recent publicity on the alleged abuse of an elderly man in an Adelaide nursing home I felt it was important to address some issues in regard to aged care.

The following opinions are my own and I just want to clarify that I am a family carer and not employed in the industry. I have however spent many days inside nursing homes as a family member and volunteer.

Firstly, ‘Dementia Downunder’(DD) is a positive dementia based forum & environment. The majority of topics and posts are discussion points for positive change and improvements to the way we care for the elderly, as well as providing support for families.

I have left the recent news footage post on the DD Facebook site (refer link below) on this occasion as it is a very ‘public conversation’ that is being beamed across Australia via news services and across the globe via the internet (so is widely viewed regardless). It is important that we remain informed and also have balanced views when it comes to forming opinions and subsequently airing responses. We do not want to display outrage by attacking people, organizations and industries with nasty comments and bullying via social media.

I would hope that we do not become disrespectful to our many wonderful carers and nurses based on this news article/report of an individual case. I see first-hand the challenges faced by carers and nurses across a day and it is simply not easy. Whilst there will always be a minority of people not doing the right thing it is imperative that we value our aged care workers and as family members continue to work together to provide great care outcomes for our loved ones. People with dementia are really vulnerable and may struggle to make the most simple of decisions or perform everyday tasks, and it is these people that we need to ensure are our highest priority.

This recent nursing home incident on the news is extremely traumatic and very confronting. The story is probably not an isolated incident, and the general public will want to express anger, however I am more interested in what we can learn from this situation and what we can do to create culture change?

What I learnt:

• It highlights how vulnerable our senior citizens are when placed in care.
• It illustrates the desperate measures taken by a family to protect their loved ones.
• It shows that some people should not be working in aged care.
• We need to have measures in place to attract the ‘right people’ into aged care both financially and with their working conditions.
• Training is vital and so is monitoring and auditing the systems.
• Are our current models of care based on old information and techniques from decades gone by?
• When we use the overused buzz word ‘person centred’ should it be used if the person is not the single prime focus of the task or environment?
• Do we always consider the person’s feelings and well being when aged care decisions are made?
• Budget cutting ultimately impacts on the person receiving the care.
• Australia needs to lead the way in aged care with our ageing population and be proactive, innovative and do so with a genuine desire to look after our elderly .

It is time for change – and we need to place a priority on our aged community and ensure they live out their lives on their terms and with dignity.

http://www.adelaidenow.com.au/news/south-australia/hidden-camera-captures-abuse-suffocation-attempt-of-elderly-man-in-adelaide-nursing-home/news-story/4c3c440a0ead0440207dcd1a04f14993

 

 

Get A Grip

I went to the nursing home last night and sat with an 84 yo man sitting in a chair by himself, and he was crying. I knelt down and asked him “what’s wrong Daryl?”.. He said “I can’t stop shaking and I don’t know what to do?”. His hands were really trembling ( a bit like Parkinson’s) and he was concerned.

I then remembered my ‘Teepa Grip’ ( refer pic) and I just held one of his hands and gave him firm palm pressure from me. I rubbed the top of his hand ( with my other hand) to create some warmth and re-assured him verbally everything will be ok.

Blow me down …Two minutes later… He stopped shaking!!!… He calmed down and started bantering with me.

Seriously, the more I interact with people the more I believe that ‘reassurance’ could be the best medicine moreso than anything else.

Another lesson in ‘natural’ dementia care from the nursing home …magic!

Dementia Care Matters – ‘A Lesson on Being Human’

 

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Yesterday I was fortunate to be asked to a lunch meeting with one of the leading international dementia care trailblazers in the world, David Sheard.

David is the Founder of the UK based ‘Dementia Care Matters’ which is a company that is offering a different way to caring for people with dementia in nursing homes.

Amazingly, he is considered controversial and ‘out there’ by many in the aged care industry, but when you sit with the man and just listen to him talk he is simply passionate about people and how they are treated. This really resonated with me and together we talked dementia for two hours without hardly taking a breath. (We almost forgot to eat our delicious meal at ‘Sean’s Kitchen’ Adelaide Casino).

Our meeting was simply a lesson in life and stripping things back to the core values of all that is good about being a person. I hung off every word that was said hoping to absorb more knowledge and learn from one of the best in the world. We talked about environment, feelings, living in the moment and so much more. I feel really privileged to be given an insight into an alternative way of doing dementia care…..but should it be the new mainstream, and is it the new ‘black’?

Key aspects of the care model include:

• Developing small household living for people with dementia in a family-like environment

• Removing institutional features such as staff wearing uniforms, medicine trolleys, and rigid ‘task-based’ routines

• Enabling greater freedom for people living in the home to do more for themselves and feel less restricted.

It has been running for over 20 years and it all made sense to me and with over 100 care homes adopting his ‘Butterfly House’ model of care (including 3 sites in Australia) it is obviously working and really needs to be given strong consideration. I worry that mainstream aged care is doing things the same way they always have, and possibly using methods that were developed many decades ago.

Love him or loathe him, David Sheard is a passionate ‘down to earth’ guy that actually CARES…..isn’t that what we all want in a nursing home?…genuine care?….certainly worth consideration.

It was also an absolute pleasure to meet Peter Priednieks (Director of Learning) and spend time with Andrew Ramsey (CEO Hands On SA). A great time was had by all.